Having a Severely Premature Baby Strengthened My Support for Every Woman’s Right to Choose

When I was 24 years old I got pregnant. My husband and I weren’t “trying” to get pregnant, but we weren’t trying not to either, and we were both very happy when we got the news. I was young, and it wasn’t written into a plan, but it was very much what I wanted.

I threw myself wholeheartedly into that pregnancy, ate all the right things and exercised appropriately. We talked about names and I daydreamed about the baby growing in me and who it would be. I loved the feeling of movement. I had mild morning sickness. I was on top of the world.

At 23.5 weeks I started spotting, and in a matter of hours found myself in a downward spiral from doctor’s office to ambulance to hospital with a level 3 neonatal intensive care unit (NICU) on the other side of town. My cervix was dilating, the baby was coming, and I was diagnosed, in the insensitive language of medicine, with an “incompetent” cervix. For almost 24 hours they worked to stop the progress. I was positioned with my head lower than my feet, in the Trendelenburg position, to try to enlist the help of gravity. I was given magnesium sulfate to slow preterm labor and dexamethasone, a steroid, to speed fetal lung development. I was hooked to a monitor that showed I was having contractions that at first I couldn’t even feel. We found out by ultrasound that it was a girl. A nurse sat by my bed all through the night.

Sometime the next morning the doctors discovered that my membranes had ruptured and that it was not going to be possible to put off delivery. They also discovered that the cord lay between my cervix and my premature daughter, meaning that natural childbirth would be fatal, and if we planned to try to save her life we would need an emergency c-section.

Whether or not we planned to save her life was not a given. Sober-faced doctors laid out in detail what our choices were. We were told that she had no chance of survival without extraordinary medical intervention. We were told that she had about a 25 percent chance of survival if we resuscitated, and that if she survived she had an over 75 percent chance of significant disability and chronic medical need.

We had a choice. We could accept what was happening—that we were losing this baby we so very much wanted, deliver her, and hold her briefly in our arms while her heart, if it was still beating after delivery, stopped. She would go, peacefully, painlessly, and we would begin the grieving process. Or we could resuscitate, intubate, and head down the uncertain and complicated road of medical intervention.

I couldn’t let her go. Lying there pumped full of magnesium, scared and tired, I couldn’t let go of the idea of that child I had become attached to over those almost six months. I couldn’t let go of my expectations of parenthood. I couldn’t accept the inevitability of grief. And so I said, “Do everything you can.” The NICU team was called, I was whisked to surgery, and we began the next stage of our journey.

The risks to a severely premature infant are many. Our daughter was born at just under 24 weeks, weighing 590 grams and measuring just 12 inches. She could not breathe on her own, and was put on the ventilator she would remain on for seven weeks, putting her at high risk for chronic lung disease. IVs were placed in veins no thicker than a strand of hair. We were told many times every day that the slightest infection could take her life. The doctors and nurses were engaged in a constant balancing act over the amount of oxygen that should be in the air pumped into her lungs. Her brain and body needed enough to survive and grow; too much could cause blindness and brain damage. At any moment the delicate veins and arteries in her brain could rupture and bleed, with the potential of death or severe physical and mental disability. I sat by her side every day, but couldn’t hold her until she was taken off the ventilator. She received two transfusions of my blood.

Gradually she grew. I pumped milk from my breasts to be fed to her through her nose. She avoided infection, there were no bleeds in her brain, and eventually she breathed on her own. After that, she learned to suck and breathe at the same time, and to regulate her own body temperature. Finally, after 100 days in the hospital, with a bill to insurance of almost $1 million, she came home, wearing a monitor to let us know if she stopped breathing. We endured months of isolation as we avoided contact with any germs from the outside.

Today my daughter is 16. She is smart, healthy, and happy. She has plans for the future; she is the joy of my life. We were lucky. We were amazingly, extraordinarily lucky. She beat all the odds. Underneath the joy of seeing how well she has done and her presence in our lives is a profound and constant relief—a relief that the decision I made did not bring her a lifetime of difficulty and pain. It could have.

I do not regret the decision I made. How could I? I have this beautiful, wonderful girl. And I know that if we had not been so lucky, we would have dealt with whatever problem or disability came our way. We had the resources and the insurance to care for her, and plenty of family support. She would have been loved, and valued, and she would have brought value to the world. I am, however, profoundly aware that the decision to resuscitate and take advantage of what modern medicine—with all its miracles and imperfections—has to offer was not a clear-cut decision ethically, or medically.

The choice regarding my daughter’s care was mine, as it should have been. It was both my moral right and my responsibility. I was her mother. She was growing in me. The complex decisions about her life were mine to make, and I made them as best I could.

I have been asked many times since whether my experience changed my commitment to and support for women’s access to later abortions. Absolutely not. If anything, it has made my support and empathy for women facing those decisions stronger. I held my daughter’s life, and the potential quality of that life, in my hands. I made a choice that was born of my hopes, my dreams, the degree of attachment I had to that pregnancy, and my expectations about motherhood. I made a choice to avoid immediate grief and pain. That choice could have condemned her to a more painful death, or a painful life. The consequences of that decision were not just mine to live with; they were hers as well. I believe it is from that very same place that most women make the decision to have an abortion, or any other number of decisions regarding pregnancy and parenting. With the ability to bear children comes the awesome and often difficult power to make decisions about that life.

I had tremendous levels of support around my choices and in the early years of parenting—privilege and the “miracle” of Emma’s good outcome ensured it. No one questioned my unplanned pregnancy. Everyone assumed her premature birth was beyond my control, not the result of bad prenatal habits or behavior. Everywhere I went, family, friends, and complete strangers affirmed my decision around her birth, applauded my strength, and labeled me a “good mother.” But in the hours I spent by her Isolette I doubted my choice to try to preserve her life, and even many years later I recognize its ethical ambiguity and how lucky we really were. Had I made the other decision, the difficult decision to let her go, would the world have embraced me so strongly? I am hopeful that it would have. If my decision had been different, if the pregnancy had not been welcome, and the considerations of my hopes and dreams and the quality of my child’s life had led me to an abortion, would society have supported and embraced me? I know that it would not have. I can’t imagine what it would have been like to have my choice taken from me, or to have endured shame and stigma from society for it. I deserved no more and no less support, understanding, and compassion than any other woman facing the complex and difficult decisions that come with being pregnant.

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  • purrtriarchy

    She was one of the lucky 1% who did not become permanently disabled. Lucky indeed.

  • ldwendy

    Thank you, thank you, thank you for sharing your story. Your story brings back many memories. When I was pregnant with my first daughter, I had preeclampsia and had to have an emergency c-section. She was born at 29 weeks weighing 2 and half pounds. She stayed two months in the neonatal intensive care unit and also came home with a monitor.

    Today, my daughter is a healthy college student. But I am keenly aware as you are, that the outcome in the neonatal intensive care could very well have had a different outcome. I chose to carry my pregnancy to term with my heart in my throat, not knowing how everything would turn out.

    “Underneath the joy of seeing how well she has done and her presence in
    our lives is a profound and constant relief—a relief that the decision I
    made did not bring her a lifetime of difficulty and pain. It could

    My sentiment exactty.

    Pregnancy experiences can impact women’s lives, leading to life-long decisions that can impact on the quality of life for both mother (and offspring). Anti-abortion folks generally think that my scary pregnancy was just “temporary” and I shouldn’t deal so much on it. But my own pregnancy experiences and complications are forever seared in my memory, and I refuse to apologize for thinking about them from time to time.

    • Arekushieru

      Seriously, anti-choice folks seem to think that abortion should be scarred in the woman’s memory forever but any negative experiences they may have from a risky pregnancy should just be immediately forgotten and left behind. Their misogyny makes me want to puke. After all, they make it apparent that if you are a woman the only thing you’re good for is pregnancy. *Barf*

      • http://batman-news.com Mummel18000

        They take every chance, every dirty step, use every possible lie to get it their way. That is why we should use guestbooks in their sites to promote our agenda – I was banned from Jill Staneks site, and I am proud of it…

        • ldwendy

          I discovered last night that I have been banned from Live Action News.

          Oh well . . .

          • purrtriarchy

            You hung in there for months. Good gawd. They are such dishonest fanatics over there. And PJ4 is the biggest idiot.

          • Arekushieru

            Be careful, purr, PJ4 is actually marking up the comments of other antis on here! :P

          • fiona64

            Congratulations! I was banned within *hours,* not because I violated TOS or anything like that, but because I had the temerity to disagree with Calvin Freakburger … and have data/sources to back me up.

          • http://plumstchili.blogspot.com/ Plum Dumpling

            I was banned because I suggested that in a Liberatarian Paradise I would be free to shoot any anti abortion stalker as a hypothetical situation. I was banned for threatening behavior. Only an excuse. They cannot handle intelligent opposition of any kind. They are terrified to come here.

          • Jennifer Starr

            I was also banned within hours for disagreeing with Little Cal. You notice how most of them never come on here–they stay in their own little echo-chamber and talk about how ‘evil’ we all are.

          • ldwendy

            Yes Jennifer – they get upset easily if you point out a problem with their preferred narratives. In their echo chamber, all adoptions are good, all disabled babies are good, and all abortions are bad. I tried to point them to Emily Rapp’s story of how she suffered for three years watching her son die of Tay-Sachs disease—how in hindsight she would have terminated the pregnancy rather than watching him suffer— and that post got removed. I was labeled a whiner because I tried to show how the other side of an issue looked.

            Just because one person has a positive experience with raising a disabled child does not mean all parent with disabled children will fare just as well. They don’t believe in shades of gray, unfortunately and they only post the sunny stories.

            My own life as a person with a hearing disability has more nuances that what LAN wants to see, I guess.

          • http://batman-news.com Mummel18000

            I am debating a bunch of them in this thread http://liveactionnews.org/killing-her-baby-is-a-special-memory-says-woman-who-filmed-her-own-abortion/ …please support me if you have the chance. It is better than sitting in our own echo chamber, as someone put it.

          • http://batman-news.com Mummel18000

            Thank you for mentioning Live Action News. I will post there (and since it graphically looks pretty much like this site, I will just post same kind of messages there and see how long I will survive)

      • redlemon

        They pretend that bad pregnancies were an anomaly or just a rare bad thing. Or that we did something wrong, like how my gestational diabetes was because I was overweight and therefore my own fault. (For the record, I was only a couple pounds overweight and what alarmed my doctor was the fact that nearly every single close family member of mine has Type 2, including grandparents and great-grandparents.) Or that it was some sort of test and I failed because I didn’t learn how to appreciate PP psychosis or gallstones.

        And then they stick their fingers in their ears and pretend that bad pregnancies don’t exist.

  • Shan

    Thanks for sharing your story. In 2001 (I’m guessing about 5 years later) I had a pre-term labor scare at about 22 weeks and nobody discussed any options with me. I was basically told that if they couldn’t stop the labor the only outcome I could expect was a dead baby. This, at a well-equipped hospital in a major US city. I might not have chosen the the “extraordinary medical intervention” but it would have been decent of them to let me know that it was an option if I wanted it.

    On the flip side, I find it really bizarre that there are multiple states with laws that REQUIRE that same extraordinary medical intervention (which I wasn’t informed was an option) to be employed to resuscitate and/or sustain an “failed abortion” which, if the fetus had been delivered by a woman who had NOT chosen to have an abortion, would have been otherwise allowed to die according to the mother’s wishes.

    • Young CC Prof

      Unfortunately, that’s the difference between 22 weeks and 24, especially over 10 years ago. Nowadays 24 weeks is a decent chance (one study says 60% survive, many without disabilities), 23 weeks is possible, 22 is a remote chance of survival, and 21 is still impossible, though that may change in the future. 13 years ago, 22 weeks WAS flatly impossible and 23 or 24 was remote chance only.

      I had a bleeding incident at 19 weeks while I was carrying my little baby, and I knew all this. I told my husband, as he was driving me to the hospital, “They’re going to do an ultrasound and say the baby’s heart is fine and they don’t know why I’m bleeding.” Then I looked straight ahead and said, absolutely flat, “If it’s coming out, it’s already dead.”

      Fortunately, the bleeding did turn out to be nothing and I carried to term. But it was pretty frightening.

    • Arekushieru

      Yup, more proof of the misogyny of the anti-choice. After all, this just proves that they don’t really care whether or not the fetus survives, that it’s all simply about controlling women.

  • Arekushieru

    Indeed. I have a friend who, at the time I was living with her, had a very similar experience to yours. Her son was born, via VBAC, at 26 weeks after the amniotic sac ruptured at 25 weeks. He was three lbs 1 oz when he was born, though. His mom had developed gestational diabetes, which is what the doctors believed caused him to gain that much weight, however. Still, he had to spend several weeks in the hospital before he could come home. For the first little while it was touch and go.

  • amomfirst

    This story is very close to my own. My daughter was born 7.5 weeks premature, after months of preterm labor, bed rest, and medical interventions. I was warned I would likely miscarry, and could have resulting disabilities. She was born with cerebral palsy and autism. She is now 18, a sophomore at a university, and has a good chance of making a life for herself, but it has taken years of hard effort, money (autism therapy is not usually covered by insurance), and time. Moreover, she has had a hard road down which to travel. People who do not understand autism can be very cruel. Like this author, I am not sorry for my decision and I am grateful for my daughter. However, I had financial resources, family support, and a partner. Like the author, I am even more firmly pro-choice after my experiences.

    • ldwendy

      Hugs to you. I have nephews with autism. Glad you hear your daughter is doing well.

  • Amy Hanauer

    This is such a smart, thoughtful, well-reasoned piece. I’m so glad that your daughter is thriving and so thankful that you want to allow others the same educated choice that you had.

  • http://about.me/clairehenry Claire Lovell

    My niece was born in 2010 at 25 weeks. Luckily she has no permanent disabilities and made it through, but had a similar experience the author’s daughter. It was only with extraordinary medical interventions at a top hospital that she made it. Every parent should have the choice to decide if they want to go through that.

  • http://snoozepossum.blogspot.com/ Snoozepossum

    Thank you for posting these words. I hope they find their way to people who are facing the same decisions, and to the people who might choose to treat them badly for having to make them.

    May your sense of fairness and compassion come back to reward you tenfold.